[FASANIMAL]

Hi guys!

I've been lurking on the forum for a while and decided to make a post asking for some info I couldn't find.

I woke up after a crazy Covid fever on Jan. 1st with my left arm super swollen and blue.

Clot confirmed. I was given Eliquis and referred to a thrombosis specialist. The thrombosis specialist sent me to get a test for TOS. 2 months after my blood clot, I was told they suspect I have VTOS.

I have now been referred to a vascular surgeon. I have my first appointment with him on May 4th.

I should mention, there is a lot more to the story, I'm essentially giving the Coles notes.

I have a few questions for any of you that are willing to answer.

1. My veins in my left hand have been going nuts lately. From what my GP has told me, as long as I am on blood thinners, I should be fine. It just makes me super nervous. As an example, if I'm at work typing, the veins in my hand will become engorged. If I lift my hand up above my head, the veins go away and my hand goes back to normal. my right hand does the same but not nearly as bad.

I guess I'm looking for reassurance that this is normal for the condition that I have and I'm not in any danger. Also, working out really scares me. I would love to workout on my stationary bike, but the veins start to flare up and I get in my own head and stop.

2. Can anyone answer why Ativan would make my symptoms go away? I have never had any mental health issues in my life, but have some bad anxiety from all of this. When I take the low dose of Ativan I was given (0.5 mg), it seems to make the veins in my hand relax.

3. My Doctor has spoken to my surgeon, and I get the impression he wants to do surgery as a last resort. I live an active lifestyle and have quite a risky job. Obviously I'm on blood thinners and have been put on desk duty at work for now. If I'm on blood thinners long term, there is a potential I will lose my dream job, along with the active lifestyle I was living (Hockey, Mountain biking, ETC)

I have heard a few of my GP's patients have VTOS and are off surgery without surgery. Is this common now?


Thanks!

Gabe

[Jomar]

Originally Posted by FASANIMAL

Hi guys!

I've been lurking on the forum for a while and decided to make a post asking for some info I couldn't find.

I woke up after a crazy Covid fever on Jan. 1st with my left arm super swollen and blue.

Clot confirmed. I was given Eliquis and referred to a thrombosis specialist. The thrombosis specialist sent me to get a test for TOS. 2 months after my blood clot, I was told they suspect I have VTOS.

I have now been referred to a vascular surgeon. I have my first appointment with him on May 4th.

I should mention, there is a lot more to the story, I'm essentially giving the Coles notes.

I have a few questions for any of you that are willing to answer.

1. My veins in my left hand have been going nuts lately. From what my GP has told me, as long as I am on blood thinners, I should be fine. It just makes me super nervous. As an example, if I'm at work typing, the veins in my hand will become engorged. If I lift my hand up above my head, the veins go away and my hand goes back to normal. my right hand does the same but not nearly as bad.

Normal for VTOS- similar positions to that is one of the tests they do

I guess I'm looking for reassurance that this is normal for the condition that I have and I'm not in any danger. Also, working out really scares me. I would love to workout on my stationary bike, but the veins start to flare up and I get in my own head and stop.

Unfortunately the arm positions for bike riding is a issue for most w/TOS. Arms forward plus neck is supporting the added weight of the head as it hangs out on the neck.....possibly a recumbent bike position would be less of a problem..

2. Can anyone answer why Ativan would make my symptoms go away? I have never had any mental health issues in my life, but have some bad anxiety from all of this. When I take the low dose of Ativan I was given (0.5 mg), it seems to make the veins in my hand relax.

Often symptoms can be magnified by anxiety....

3. My Doctor has spoken to my surgeon, and I get the impression he wants to do surgery as a last resort. I live an active lifestyle and have quite a risky job. Obviously I'm on blood thinners and have been put on desk duty at work for now. If I'm on blood thinners long term, there is a potential I will lose my dream job, along with the active lifestyle I was living (Hockey, Mountain biking, ETC)

I have heard a few of my GP's patients have VTOS and are off surgery without surgery. Is this common now?

Not sure what job , past injuries or other activities you do.. those can play a big part in avoiding surgery or getting worse..

Much depends on how good your PTs, DCs or any treatment provider is..
And how much you change your lifestyle to focus on recovering until you can go back to more normal activities.. upper body posture /alignment work may help.

Thanks!

Gabe

I suggest you explore our useful sticky threads section above on the main TOS discussion page.
So much good info saved there..

[Jomar]

Our search tool can help find keywords, symptoms, etc ...
https://www.neurotalk.org/search.php

[Lara]

Hi and welcome to NeuroTalk.

Can anyone answer why Ativan would make my symptoms go away? I have never had any mental health issues in my life, but have some bad anxiety from all of this. When I take the low dose of Ativan I was given (0.5 mg), it seems to make the veins in my hand relax.

It's a muscle relaxant.

[FASANIMAL]

Originally Posted by Lara

Hi and welcome to NeuroTalk.



It's a muscle relaxant.

I feel like I should have known that. That makes a lot of sense now.

Thanks

[FASANIMAL]

Originally Posted by Jomar

I suggest you explore our useful sticky threads section above on the main TOS discussion page.
So much good info saved there..

I was having some issues with the search function. The sticky threads have been very helpful thanks.

[Kitt]

Welcome FASANIMAL.

[FASANIMAL]

Originally Posted by Kitt

Welcome FASANIMAL.

Thank you!